Connect With Your MDA Community

Helping members find and build strong relationships with each other is a valuable part of MDA’s mission to serve the neuromuscular disease community, which is why we have created multiple programs that give community members opportunities to connect. From asking each other questions about treatments or mobility aids to discussing challenges of daily living or sharing an afternoon of fun, these programs provide safe and supportive spaces, no matter where you are. Find the right program for you here.

Would you like to connect with others with similar experiences?

Community Support Groups

MDA Community Support Groups are virtual support groups that provide a safe place for meaningful connection with others within the neuromuscular community. Regularly scheduled online meetings give participants the opportunity to exchange valuable information and resources with others who share similar experiences.

There are multiple active groups at any given time, currently including:

• Pediatric, for children or their parents/guardians
• Adult, for individuals ages 18 and up
• ALS, for individuals living with the disease
• Gene therapy, for parents/guardians of children with DMD or SMA who receive or are interested in gene therapy

Each group is facilitated by an MDA Care Center provider, MDA staff, or other specialist in the community.

To join a Community Support Group, visit mda.org/CommunityGroups and complete an interest form. If you do not find a group that would be a good fit, contact the Resource Center at 1-800-572-1717 or ResourceCenter@mdaUSA.org.

Peer Connections

MDA’s Peer Connection program helps community members connect with each other one-on-one. By request, MDA Support Specialists will make introductions between individuals with similar diagnoses or their caregivers, parents, spouses, or siblings.

“Participants can specify that they are open to being connected to others in MDA’s community based on criteria including diagnosis, age, interests, and preferred form of communication,” says Sara Melton, Senior Family and Clinical Support Specialist. “Once a program entry form is completed, a Support Specialist will work with you to find your match.”

Support Specialists will check in to see how the matches are going, but participants decide when, where, and how often they connect. The program has made more than 300 connections since its inception, and is open to Spanish speakers.

“We have fostered connections that decide to meet twice a month for a phone call and others who have decided to meet in person for coffee,” Sara says. “It is a joyous experience to be a part of connecting families who are in the same community, in different states, or across the country.”

To join Peer Connections, contact the Resource Center at 1-800-572-1717 or ResourceCenter@mdaUSA.org and ask for a program entry form.

Are you looking for fun activities to enjoy with other MDA community members?

Family Getaways

MDA’s Family Getaways are three-day all-ages destination experiences for people living with neuromuscular diseases and their families to enjoy accessible recreation activities together. They are held at summer camp facilities, resorts, or adaptive recreation centers in locations throughout the United States.

Getaways are provided at no cost for MDA members and their family unit, such as spouses, siblings, and caregivers. “Anyone registered with the MDA community is welcome to attend with their family, from toddlers to adults,” says Kelsie Andreska, MDA’s Director of Recreation Programs.

MDA recognizes that everyone’s situations are different. “We encourage you to reach out to us if you have questions on who can attend with your family. For instance, if an adult MDA member lives independently with a care provider and considers them family, we absolutely welcome that,” Kelsie says.

MDA Recreation Program Specialists are involved every step of the way, from registering people for Family Getaways to planning adaptive activities at Getaway locations, so families can enjoy time with each other and connect with other families there.

“Everyone deserves the opportunity to experience really cool recreation activities and experiences away from home with their loved ones,” Kelsie says.

Learn about upcoming Family Getaways at mda.org/family-getaways.

Let’s Play

MDA Let’s Play members meet online nearly every day of the week to game, host art and design classes, watch movies, play trivia, and more. “It fosters a safe and inclusive online space for members to practice self-expression, share with others, and feel a sense of belonging,” says Scott Wiebe, MDA’s Director of Community Programs.

Let’s Play has its own channel on Discord (a free app for messaging and chatting) that is open only to group members and moderated for problematic behavior or community rule violations. Let’s Play activities are streamed on Twitch, a free interactive livestreaming service. Discord and Twitch are open to users ages 13 and up without adult supervision, but parents/guardians can sign their younger children up for Let’s Play and are encouraged to watch along.

Scott says most members are ages 14 to 20, so Let’s Play programming is aimed to be appropriate for this age group. But anyone who lives with a neuromuscular disease or wants to support the MDA community can join Let’s Play. “The only prerequisite is being kind and encouraging toward others,” Scott says.

Learn how to join Let’s Play at mda.org/lets-play.